Dataset Information

Development of the PC-7, a Quantifiable Assessment of Spiritual Concerns of Patients Receiving Palliative Care Near the End of Life.

ABSTRACT: Background: Attending to the religious/spiritual (R/S) concerns of patients is a core component of palliative care. A primary responsibility of the chaplain is to conduct a thorough assessment of palliative care patients' R/S needs and resources. Problems with current approaches to spiritual assessment in all clinical contexts, including palliative care, include limited evidence for their validity, reliability, or clinical usefulness; narrative content; and lack of clinical specificity. Objectives: The aim of our work was to develop an evidence-based, quantifiable model for the assessment of unmet spiritual concerns of palliative care patients near the end of life. Design: The PC-7 model was developed by a team of chaplains working in palliative care. Phase 1 used literature in the field and the chaplains' clinical practice to identify key concerns in the spiritual care of palliative care patients. Phase 2 focused on developing indicators of those concerns and reliability in the chaplains' rating of them. Results: Key concerns in the model include the following. Need for meaning in the face of suffering; need for integrity, a legacy; concerns about relationships; concern or fear about dying or death; issues related to treatment decision making; R/S struggle; and other concerns. An approach to scoring the patients' degree of unmet spiritual concerns was adapted from the literature. Assessing cases from the chaplains' practice led to high levels of agreement (reliability). Conclusion: Using the PC-7 model, chaplains can describe and quantify the key spiritual concerns of palliative care patients. Further research is needed to test its validity, reliability, and clinical usefulness.

SUBMITTER: Fitchett G

PROVIDER: S-EPMC6987727 | biostudies-literature | 2020 Feb

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Development of the PC-7, a Quantifiable Assessment of Spiritual Concerns of Patients Receiving Palliative Care Near the End of Life.

Fitchett George G Hisey Pierson Anna Lee AL Hoffmeyer Christine C Labuschagne Dirk D Lee Aoife A Levine Stacie S O'Mahony Sean S Pugliese Karen K Waite Nancy N

Journal of palliative medicine 20190904 2

<b><i>Background:</i></b> Attending to the religious/spiritual (R/S) concerns of patients is a core component of palliative care. A primary responsibility of the chaplain is to conduct a thorough assessment of palliative care patients' R/S needs and resources. Problems with current approaches to spiritual assessment in all clinical contexts, including palliative care, include limited evidence for their validity, reliability, or clinical usefulness; narrative content; and lack of clinical specifi ...[more]

PMID: 31483184

Similar Datasets

Project description:Background and objectivesWithdrawal from maintenance hemodialysis before death has become more common because of high disease and treatment burden. The study objective was to identify patient factors and examine the terminal course associated with hemodialysis withdrawal, and assess patterns of palliative care involvement before death among patients on maintenance hemodialysis.Design, setting, participants, & measurementsWe designed an observational cohort study of adult patients on incident hemodialysis in a midwestern United States tertiary center, from January 2001 to November 2013, with death events through to November 2015. Logistic regression models evaluated associations between patient characteristics and withdrawal status and palliative care service utilization.ResultsAmong 1226 patients, 536 died and 262 (49% of 536) withdrew. A random sample (10%; 52 out of 536) review of Death Notification Forms revealed 73% sensitivity for withdrawal. Risk factors for withdrawal before death included older age, white race, palliative care consultation within 6 months, hospitalization within 30 days, cerebrovascular disease, and no coronary artery disease. Most withdrawal decisions were made by patients (60%) or a family member (33%; surrogates). The majority withdrew either because of acute medical complications (51%) or failure to thrive/frailty (22%). After withdrawal, median time to death was 7 days (interquartile range, 4-11). In-hospital deaths were less common in the withdrawal group (34% versus 46% nonwithdrawal, P=0.003). A third (34%; 90 out of 262) of those that withdrew received palliative care services. Palliative care consultation in the withdrawal group was associated with longer hemodialysis duration (odds ratio, 1.19 per year; 95% confidence interval, 1.10 to 1.3; P<0.001), hospitalization within 30 days of death (odds ratio, 5.78; 95% confidence interval, 2.62 to 12.73; P<0.001), and death in hospital (odds ratio, 1.92; 95% confidence interval, 1.13 to 3.27; P=0.02).ConclusionsIn this single-center study, the rate of hemodialysis withdrawals were twice the frequency previously described. Acute medical complications and frailty appeared to be driving factors. However, palliative care services were used in only a minority of patients.

Project description:Background: End-of-life discussions and documentation of preferences are especially important for older cancer patients who are at high risk of morbidity and mortality. Objective: To evaluate influence of demographic factors such as religiosity, education, income, race, and ethnicity on treatment preferences for end-of-life care. Methods: A retrospective observational study was performed on baseline data from a multisite randomized clinical trial of Dignity Therapy in 308 older cancer patients who were receiving outpatient palliative care (PC). Interviews addressed end-of-life treatment preferences, religion, religiosity and spirituality, and awareness of prognosis. End-of-life treatment preferences for care were examined, including preferences for general treatment, cardiopulmonary resuscitation (CPR), and mechanical ventilation (MV). Bivariate associations and multiple logistic regression analysis of treatment preferences with demographic and other baseline variables were conducted. Results: Our regression models demonstrated that race was a significant predictor for CPR preference and preferences for MV, although not for general treatment goals. Minority patients were more likely to want CPR and MV than whites. Men were more likely to opt for MV, although not for CPR or overall aggressive treatment, than women. Higher level of education was a significant predictor for preferences for less aggressive care at the end-of-life but not for CPR or MV. Higher level of terminal illness awareness was also a significant predictor for preferences for CPR, but not MV or aggressive care at the end-of-life. Discussion: Race was significantly associated with all three markers for aggressive care in bivariate analysis and with two out of three markers in multiple regression analysis, with minorities preferring aggressive care and whites preferring less aggressive care. Contrary to our hypothesis, income was not significantly associated with treatment preferences, whereas religion was significantly associated with all markers for aggressive care in bivariate models, but not in multiple regression models. Clinical Trial Registration Number NCT03209440.

Project description:BackgroundThe consensus among Canadians with regards to end-of-life preferences is that with adequate support the majority prefer to live and die at home.PurposeTo compare quality indicator (QI) rates for home care clients receiving palliative and end-of-life care prior to and after the onset of the COVID-19 pandemic.MethodsA retrospective population-based cohort design was used. Sixteen QIs informed by existing literature and a preliminary set of QIs recently evaluated by a modified Delphi panel were compared. Data were obtained from the interRAI Palliative Care instrument for Ontario home care clients for two separate cohorts: the pre-COVID (January 14, 2019 to March 16, 2020) and COVID cohort (March 17, 2020 to May 18, 2021). A propensity score analysis was used to match (using nearest neighbour matching) on 21 covariates, resulting in a sample size of 2479 unique interRAI Palliative Care assessments in each cohort. Alternative propensity score methods were explored as part of a sensitivity analysis.ResultsAfter matching the pre-COVID and COVID cohorts, five of the 16 QIs had statistically significant differences in the QI rates (change from pre-COVID to COVID): decrease in prevalence of severe or excruciating daily pain (p = 0.03, effect size=-0.08), decrease in prevalence of caregiver distress (p = 0.02, effect size=-0.06), decrease in prevalence of negative mood (p = 0.003, effect size=- 0.17), decrease in prevalence of a delirium-like syndrome (p = 0.001, effect size=-0.25) and decrease in prevalence of nausea or vomiting (p = 0.04, effect size=-0.06). While the alternative propensity score methods produced slightly different results, no clinically meaningful differences were seen between the cohorts when effect sizes were examined. All methods were in agreement regarding the highest QI rates, which included the prevalence of shortness of breath with activity, no advance directives, and fatigue.ConclusionThis study is the first to examine differences in QI rates for home care clients receiving palliative and end-of-life care before and during COVID in Ontario. It appears that QI rates did not change over the course of the pandemic in this population. Future work should be directed to understanding the temporal variation in these QI rates, risk-adjusting the QI rates for further comparison among jurisdictions, provinces, and countries, and in creating benchmarks for determining acceptable rates of different QIs.

Project description:ImportancePalliative care has the potential to improve care for patients and families undergoing high-risk surgery.ObjectiveTo characterize the use of perioperative palliative care and its association with family-reported end-of-life experiences of patients who died within 90 days of a high-risk surgical operation.Design, setting, and participantsThis secondary analysis of administrative data from a retrospective cross-sectional patient cohort was conducted in the Department of Veterans Affairs (VA) Healthcare System. Patients who underwent any of 227 high-risk operations between January 1, 2012, and December 31, 2015, were included.ExposuresPalliative-care consultation within 30 days before or 90 days after surgery.Main outcomes and measuresThe outcomes were family-reported ratings of overall care, communication, and support in the patient's last month of life. The VA surveyed all families of inpatient decedents using the Bereaved Family Survey, a valid and reliable tool that measures patient and family-centered end-of-life outcomes.ResultsA total of 95 204 patients underwent high-risk operations in 129 inpatient VA Medical Centers. Most patients were 65 years or older (69 278 [72.8%]), and the most common procedures were cardiothoracic (31 157 [32.7%]) or vascular (23 517 [24.7%]). The 90-day mortality rate was 6.0% (5740 patients) and varied by surgical subspecialty (ranging from 278 of 7226 [3.8%] in urologic surgery to 875 of 6223 patients [14.1%] in neurosurgery). A multivariate mixed model revealed that families of decedents who received palliative care were 47% more likely to rate overall care in the last month of life as excellent than those who did not (odds ratio [OR], 1.47 [95% CI, 1.14-1.88]; P = .007), after adjusting for patient's characteristics, surgical subspecialty of the high-risk operation, and survey nonresponse. Similarly, families of decedents who received palliative care were more likely to rate end-of-life communication (OR, 1.43 [95% CI, 1.09-1.87]; P = .004) and support (OR, 1.31 [95% CI, 1.01-1.71]; P = .05) components of medical care as excellent. Of the entire cohort, 3374 patients (3.75%) had a palliative care consultation, and 770 patients (0.8%) received it before surgery. Of all decedents, 1632 (29.9%) had a palliative care consultation, with 319 (5.6%) receiving it before surgery.Conclusions and relevanceReceipt of a palliative consultation was associated with better ratings of overall end-of-life care, communication, and support, as reported by families of patients who died within 90 days of high-risk surgery. Yet only one-third of decedents was exposed to palliative care. Expanding integration of perioperative palliative care may benefit patients undergoing high-risk operations and their families.

Project description:Hematologic malignancies are a heterogeneous group of diseases with unique illness trajectories, treatment paradigms, and potential for curability, which affect patients' palliative and end-of-life care needs. Patients with hematologic malignancies endure immense physical and psychological symptoms because of both their illness and often intensive treatments that result in significant toxicities and adverse effects. Compared with patients with solid tumors, those with hematologic malignancies also experience high rates of hospitalizations, intensive care unit admissions, and in-hospital deaths and low rates of referral to hospice as well as shorter hospice length of stay. In addition, patients with hematologic malignancies harbor substantial misperceptions about treatment risks and benefits and frequently overestimate their prognosis. Even survivors of hematologic malignancies struggle with late effects, post-treatment complications, and post-traumatic stress symptoms that can significantly diminish their quality of life. Despite these substantial unmet needs, specialty palliative care services are infrequently consulted for the care of patients with hematologic malignancies. Several illness-specific, cultural, and system-based barriers to palliative care integration and optimal end-of-life care exist in this population. However, recent evidence has demonstrated the feasibility, acceptability, and efficacy of integrating palliative care to improve the quality of life and care of patients with hematologic malignancies and their caregivers. More research is needed to develop and test population-specific palliative and supportive care interventions to ensure generalizability and to define a sustainable clinical delivery model. Future work also should focus on identifying moderators and mediators of the effect of integrated palliative care models on patient-reported outcomes and on developing less resource-intensive integrated care models to address the diverse needs of this population.

Dataset Information

Development of the PC-7, a Quantifiable Assessment of Spiritual Concerns of Patients Receiving Palliative Care Near the End of Life.

Publications

Development of the PC-7, a Quantifiable Assessment of Spiritual Concerns of Patients Receiving Palliative Care Near the End of Life.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets